treatments delayed due to holidays

[mstlyn]

I just wanted to bring this to the attention of those that have not been informed yet.

Today was the last day of my sons 3rd cycle of EP.

I asked the nurse to schedule him for his final treatment which should be April 2nd through April 6th.

The chemo nurse scheduled him for april 9th - april 13th. Why? Because of Good Friday.

This will make my sons treatment begin 9 days late which according to the TCRC is unacceptable.

I told the nurse that his chemo can not be delayed that long and she said, "well we are closed on friday, april 6th.

She also told me that if my sons white count was low the same thing would happen and it would be fine.

I told her that any doctor that knows what he is doing would not delay chemo that long for a TC patient. She said, well if you dont want it delayed we can increase the dose and give all of it to him in 4 days instead of 5, allowing him to get his treatment the week of April 2nd.

I have never heard of this so I told her I would just discuss it with the doctor at my sons next oncology appt.

She said.. whatever you are comfortable with.

For anyone that has not read the TCRC site about this, please do. If you are being told your chemo will be held for a week or longer due to good friday, don't accept it.

I told them that I wont mind taking him to the E.R. for his last cycle if necessary, but he needs to have it on time.

I am trying to contact Einhorn about this to see if it is safe and equally effective, to take the final cycle in 4 days by increasing the dose.

[mstlyn]

No, I missed the discussion about the 4 day increased dose. Is that on the same page as discussion about delaying chemo on TCRC?

[petep]

share this with your healthcare professionals...

I was treated by dr. benedetto at the univ. of miami...he told me "when you start, you absolutely must stay on schedule...even if your mom dies, you can not stray from the schedule...no excuses"

this is not acceptable at all. There is a treatment protocol for a very good reason....the time intervals are critical...if you study the various chemo drugs used and their methods of action, this is clear...they should know this.

[mstlyn]

Thanks Petep. I will use your info too. I am looking for all the information I can gather to put together and take it to them.

[DianeE]

Dr. David Vaughn, who is a TC expert, told my son he would admit a patient into the hospital rather than delay chemo even one day. Insist that your son
be admitted so he can stay on schedule. You're almost finished. Don't let them mess it up now!!

Diane

[italian_tc]

I don't know if this can help...in some hospital in Italy is "normal" to give peb only one day per week...with the full dose of chemo in the first day, seem that this work in the same way. I ask to an oncologist why and she told me, it's better for the confort...chemo work in the same way...but you spend only one day each week...
I don't know if it's true but I don't trust this, somewhere I read about this like a way to save money...
in my opinion ... do everithing you can for staying on schedule! You are shure this work!

[dadmo]

mstlyn:
Great Job. You are a wonderful advocate for your son. I wish I saw more of this.

[Fed]

Mstlyn,
Bravo! Keep bugging them! The argument is simple: cancer does not take holidays. There is no reason to take a break when you're so close to finishing treatment.

[Jilleighn]

When my husband was on treatment they told us if the office was closed then he would do inpatient to get his chemo and not to miss a day.

[Russell's Mom]

hang on

You go girl!!! They did the same to Russell. Experts shared best not to go beyond 7 days..we went to 9. Caught in the system and exhausted, I gave in. If it came up again, I would fight for the correct schedule. So far so good on the pathology results........if something changes it will be a life long thorn!! Take care, Russell's Mom, Sharon

[mstlyn]

Thank you to everyone that responded. I am hoping that new members see this message though because it concerns me that others may have their chemo treatment delayed too, since the treatments run from monday through friday.

I am copying messages from all of you that have been told the same thing by your doctors, and a copy of the TCRC page about this and taking it to the next appointment. I will show it to the oncologist AFTER I see what he has to say about the delay in treatment. I am curious about what he will say.

I also got an email sent out to Dr. Einhorn about it and I hope that I will hear from him before the appointment, so I can take his message to them as well.

I think a copy of the TCRC pages should be taken to every chemo clinic there is with certain information highlighted throughout. It is really frightening to see how uninformed medical professionals are. I am afraid that far too many people with this disease will not receive the right treatment because not everyone will get on the internet and begin searching for information. Instead, they accept whatever the doctor does, because they do not know any better. I know for a fact that if I was not here that would be the case with my son.
How sad that any human being should lose their life because of incompetence. So what, testicular cancer is not very common. Doctors still have an obligation to educate themselves throughly about it so that they don't miss anything that will risk the lives of the victims.

That may sound harsh, but I don't think these doctors should get a pass just because TC is rare. 7,000 to 8,000 per year is not exactly THAT rare. It may not be 200,000, but it is still a lot of people that deserve to have their disease diagnosed TIMELY, and treated PROMPTLY and CORRECTLY.

I am in this all the way. Not only for my son, but for others. I will do what I can to get information to people that are not aware of TC and the monthly exams, and how important it is to never ignore a lump or other symptoms.

I agree that this is a good thing to teach in boys gym class, sex ed, and at doctors visits. Maybe when a 12 year old has a sports physical, education about TC should be included too. Far too many parents never discuss sex, periods, STD's. What would make them think to discuss Tc with their boys? Odds are that the parents dont know about it anyway.

[Russell's Mom]

variation on the same theme

April 2005-nurse practitioner sent Russell out the door because she could not feel the lump.
July 2005-Russell came back to me with concern again, lump is bigger. Went to Primary care MD.
Aug 2005- to the specialist, who without blood work or ultrasound , diagnosed spermatocyle and "it will go away!!!"
April 2006- Russell has severe back pain, to MD XRAY Ibuprofen
July 12, 2006- Pain is getting unbearable, bak to MD- Valium
July 13, 2006, I asked Russell to come to my house so that I could look at him. To ER...diagnosed with advanced metastatic cancer-testicular!
About one month into the treatment, I couldn't help asking, (thank God gentle words came) what were his thoughts. He told me that after seeing three doctors about his lump, it was time to start dealing with it like a man and to stop worrying about it.
My mind just went away from me....there is a lot of work to be done.
Take care, Russell's Mom, Sharon

[mstlyn]

April 2005-nurse practitioner sent Russell out the door because she could not feel the lump.
July 2005-Russell came back to me with concern again, lump is bigger. Went to Primary care MD.
Aug 2005- to the specialist, who without blood work or ultrasound , diagnosed spermatocyle and "it will go away!!!"
April 2006- Russell has severe back pain, to MD XRAY Ibuprofen
July 12, 2006- Pain is getting unbearable, bak to MD- Valium
July 13, 2006, I asked Russell to come to my house so that I could look at him. To ER...diagnosed with advanced metastatic cancer-testicular!
About one month into the treatment, I couldn't help asking, (thank God gentle words came) what were his thoughts. He told me that after seeing three doctors about his lump, it was time to start dealing with it like a man and to stop worrying about it.
My mind just went away from me....there is a lot of work to be done.
Take care, Russell's Mom, Sharon

This is inexcusable in my opinion. What a shame that it took so long and had to become so advanced. No reason for it whatsoever. I know that it does no good to look back at what could have or should have been done, but I think it is extremely important to make an issue about it. Otherwise, when will these doctors pay attention and stop letting things like this happen?

There should be no more excuses for incompetence, or "not having experience" due to TC being an uncommon cancer. Facts are that it DOES exist and it does affect several thousand males every year, and it is the doctors responsibility to make it their business to learn about it.

This should not be happening to these guys.

[mstlyn]

Dr. Einhorns email

I am pasting the email message I got from Dr. Einhorn about the clinic trying to delay my sons chemo treatment because of good friday.

He had some comments about a couple of other things as well.

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"Sounds like you are not exactly in a center of excellence. There is no value on what happened in the past with delays and increased anxiety but need to deal with the present.He has favorable disease and altho this is not what I would have done,he will almost certainly be cured of his cancer.There is no reason to delay the 4th and final course of EP, and if they cannot treat on Good Friday, it is perfectly safe to compress the 5 days of etoposide (E) and cisplatin (P) into 4 days, giving the same total dose.Postchemotherapy RPLND will be needed only if there is still enlarged nodes on CT scan of abdomen (> 1 cm in size).Surgery should be done in a center of excellnece if it is needed.

[Jonathan_G]

April 2005-nurse practitioner sent Russell out the door because she could not feel the lump.
July 2005-Russell came back to me with concern again, lump is bigger. Went to Primary care MD.
Aug 2005- to the specialist, who without blood work or ultrasound , diagnosed spermatocyle and "it will go away!!!"
April 2006- Russell has severe back pain, to MD XRAY Ibuprofen
July 12, 2006- Pain is getting unbearable, bak to MD- Valium
July 13, 2006, I asked Russell to come to my house so that I could look at him. To ER...diagnosed with advanced metastatic cancer-testicular!

My God!

I'm not a believer in litigating everything, but there's no other word for this than malpractice. If these people aren't sanctioned in a court of law, tbey'll go on victimizing their patients.

I'd sue the pants off that "specialist"!